hi just love reading all things on here but was wondering is anyone at same stage as me to follow notes with. day one felt OK full of energy no sickness but hungry. little and often. period started two days early so that to contend with as we… i had a restless night needed wees tummy pains from period and strong winds outside not me. now feel better as doing things. snowy showers andbitterly strong winds here in bedford have a good easter all.
Hi
Would be great to compare symptoms !
Had my first FEC and cold cap on the 18th. Had a little nausea on the 3rd day which has passed but seem to be suffering from bad indigestion over the past couple of days. It may be that I’ve been eating the wrong things and maybe too large portions - will try to be more careful.
How did you find the cold cap? After the initial shock I seemed to get used to it. The downside is that it prolongs the time you are there. I’m now thinking that at least if my hair does fall out, then I have the bonus of each treatment not taking so long. I’m also due to have a PICC line put in before the next dose (I’m not terribly good with veins and needles, plus my veins are quite small)
I’m actually having chemo to try and shrink my lump before they remove it. The good thing about that is that I should actually see it getting smaller and will know that the chemo is working.
Hope you have a good weekend
Sarah
x
Hi Sarah
Re cold cap. I actually found it was much better than i thought. I was dreading staying longer but the time seem to pass really quickly. During last half hour i needed loo and was unplugged and had to hold cap pipe up well my hand was nearly frozen by the time i got back. ha ha The coldness didnt seem to bother me it was the weight if anything. We did laugh when they took it off as i had ice cubes on my head. Would have been alright for to-days weather.
I do have a wig fitting next week but don’t really want one i want my own hair… We live in a village and so far have been able to keep all quiet but a wig would give it away. Dare i risk it and put it off another week Do you know when we will know if it is working or not.
You mention you are having a picc line put in what does this mean i did not mention me having one or is this all part of the treatment.
I am having a nurse come Mon for 7 days to give me immunity injections as i have a wound not healed from op. I am dreading this as it gives you flu like symptoms and achy bones. Cant win can we.
By the way i am 49 had lumpectomy then mastectomy and reconstruction straight away having chemo 6 fec then herceptin then tamoxifen. What is your history if you don’t mind saying .Take care and keep in touch.
xxx julie xxx
Hi Julie
I’m not at exactly the same stage as you, saw the oncologist today and expect to start Epi in a couple of weeks, followed by CMF. I’m 51 and had mast/recon 3 weeks ago. I just wanted to say I know exactly what you mean about village life… I have always had long hair, losing it will be like going out with a badge announcing what’s happening. So far nobody in the village knows, we’re in an isolated spot and even my only immediate neighbour knows only that I was in hospital and can’t drive for a while. She brought flowers round late on the first evening I was home, looked me up and down and said, “Well, you LOOK fine”! I wanted to be relaxing with my family and ushered her out, assuring her I was indeed fine! I want to try cold cap, anything to keep my hair, but the onc did suggest cutting it short (he actually suggested a pageboy style, how 1970s is that?) but perhaps a wig is an option. Awful, awful thought. Love, Lyn xx
Hi Julie
I too had to break for the loo during my cold cap - it must be something to do with the coldness. The unfortunate thing was that the toilet was situated on the other side of the waiting room!
I’m 40 and was diagnosed on 21st Feb. I had a CT and bone scan the next day and a sentinal node biopsy just under three weeks ago. All came back showing no apparent spread which was great news, however the lump is 8cm plus I’m triple negative (which means I can’t be followed up with hormones after sergury) and so the doctors want to do chemo first (4 x FEC plus 4 x Docetaxol) in the hope they can reduce the size of the lump to reduce the impact of surgery. It’s a little weird having to live with the cancer still inside but the good thing is that they will be able to see if the chemo is actually working, and if not, they can change the drugs I am on. It doesn’t look as though I’ll actually have surgery until September which seems such a long time and then a course of radiotherapy !
The PICC line I mentioned is a flexible tube they insert into one of our large veins via your arm. It stays in for the whole course of chemo, which means they don’t have to find a vein every time you have to have bloods taken, or have the chemo. A bit nervous about having it put in, but I think it should cause less distress in the long-run as I’m verging on having a phobia about veins.
I think you’ll know how your hair is reacting around 3 or 4 weeks after the first chemo - although everyone is different and I’ve read that some people do get some thinning with the cold cap but don’t loose it all - we’ll just have to keep our fingers crossed that it works for us.
The main hair worry for me is with work. I’m an events organiser and do not want to be too obvious in meetings etc. I live in Bristol so don’t get the village reaction that you and Lyn are experiencing. One tip I’ve read is to try to only wash your hair a couple of times a week - I’m finding that quite hard !
I do hope the immunity injections go OK and that your side effects aren’t too awful - one thing I seem to be learning from this site is that every person is individual in their treatment and reaction to treatment so hopefully you won’t suffer too much
Let me know how it goes
Sarah
xxx
Hi Julie and Sarah,
I used the cold cap for my first treatment too but unfortunately it did not work. I can’t help wondering if I had got my hair thinned and out before hand if it would have worked. My hair was really thick and I felt the cold didn’t reach my scalp properly.
I just had my second AC treatment on the 19th had to have a hickman line put in on the 18th as they had trouble getting a good vein for the 1st treatment.
I suffered a little with heart burn and nausea but I must admit I expected side effects to be worse.
Helen X
Hi there,
I understand the worry about wigs and everyone knowing. Have a look at this website it has some lovely wigs and it’s where I got mine from. I went for a style as near to my own as possible, and they do a lot of them in different colours. I went before treatment, so I knew it was all in place if I needed it. It cost £25 for an hour with them, and they are used to seeing chemo ladies so it was very relaxed. You can then ‘choose’ a wig, but if you don’t need it you don’t have to buy it. If you do, they deduct the £25 from the cost. Also they will cut it if necessary. Because you are having tratment you don’t pay VAT.
Also, ask your breast care nurse as you can get a wig on the NHS and they come to your house to try them on.
Good luck with your chemo and cold caps. I have to say it didn’t work for me, but I had very thick hair and I suspect it wasn’t getting through to the scalp enough.
Love Caz xxx
Hi Helen & Caz
Helen - I agree regarding the side effects ( I think the heartburn has actually been the worst bit so far !) but I’m aware that the chances are it could get progressively worse.
Caz - many thanks for the wig advice - I think getting one ‘just in case’ is a great idea
Good luck to you both with your treatments - keep in touch
Sarah
x
Hi girls, I had 6 Ec and tried the cold cap for 3, it didn’t work, so I gave up. My hair is very fine, and the chemo nurses told me it worked better on thicker hair
i got a wig on the NHS, but also bought one online from wigs and pieces, i much preffered it
Hope all your treatments go well, good luck
Marge
xx
hi girls
like you Sarah having chemo first then surgery radiotherpay etc. 3 of each though not 4. had my first FEC on 20th. felt really rubbish after. Have been looking at wigs on line too - bit wary of the ‘human hair’ one’s though! Been told by my unit of a local haridressers that do the whole thing… doing the hairstyle like the wig which earlier lady suggested, so might make a visit before i find the best part of me on the pillow… i’m 44, recently married for the second time, 2 great boys aged 12 and 14 and a full time job! so plenty of challenges ahead.
Only downside - apart from looking like Linda Blair on Good Friday - has been that the immune boosing injections bring out an allergy so had to stop. now worried what i’ll pick up and would love any tips on how to stay upright between days 8 and 14!
thanks
jayne
hya
my god just read my last posting - must concentrate more and less of watching edwardian/victorian diet thing on channel 4!!
jayne
hi update from 20th march.
i am not sure when hair would start to fall out. have just given it a good wash and nothing i did pat and not rub also hair dried on low heat. i have short but thick hair. i don’t really want to molly coddle it then fall out on last treatment if no what i mean.
with steroids on days 1 to 3 i stuffed lots little and often i have put on weight. day 4 woke a bit sickly didn’t take anything and passed.
Easter Mon had first immunity inj around 11 and by 5 i couldn’t move top half of body bones skin ached bed after eastenders woke in pain no way could i have 7. my nurse says i am lucky most hospitals give 1 or 3 so i should keep quiet as they are good for me. i rang oncologist explained how bad. she said could do it every other day but must take 7. i posted on here and one lucky person replied and gave me confidence to go ahead with second and i am so glad as nowhere near as bad 2nd time round. i will have them daily to get them out of way. third due today.
i feel OK in self although tired in pms.
Hows it going with all others who started same time approx.
i do have a headache and not sure what allowed to or not to take…
have a good day. xx Julie xxx
Hi Girls
I am on day 8 now of my second treatment and feeling a bit better nausea went on day 9 last treatment so I am hoping this will be the same.
I have been prescribed omeprazole to stop the acid reflux which is working a treat no heartburn this time round. I also have fybojel for IBS which is also working a treat, so a lot better for me this time round.
I was wondering about the immunity injections why do you get them?
Also I didn’t really like the NHS wig I found it too hot to wear. I did a search on line for wigs and managed to find a local body shop that sold the wigs I liked on line so I bought a nice one for £184 which I thought wasn’t any more than I would spend at the hair dressers in 6 months any way. It’s a lot lighter and more breathable than the NHS one.
Hi everyone
I’m just hitting my second week since first FEC so at that stage where the blood count is low. My breast care nurse said not to be too paranoid and so I’ve gone back to work. Doing all the stuff they said, like cleaning my teeth and using mouthwash after eating, good hygiene (hopefully I already had that !) etc.
Hopefully it’ll be enough to stop me catching anything.
Have a appointment to talk about wigs just in case. Julie - I don’t think hair starts falling out until about 3rd week (but don’t quote me on that)
So sorry to hear that the immune injections are so dreadful - I’ve haven’t been offered them, but maybe it depends on your individual starting blood count…?
Hang on in there girls - we can do this !
Sarah
Hi Julie
Sorry I meant to answer your question about headaches.
I was told it was ok to take paracetomal as I too quite often get headaches.
I am very tired too luckily my husband has a really good job and I am stay at home Mum.
I get up later in the morning a go to bed earlier at night though.
Helen x
Hi, Sarah, Julie, Jayne,
I had first FEC of 6 on 19th.
Am such a wuss! Worse bit was all that cold stuff in my arm. No way was I trying the cold cap. The thought of it made me feel sick.
So far, not too bad. Few days of feeling a bit sicky, spot of constipation, bit of trouble sleeping. A few spots. Slight sore throat. Just waiting to see what happens really.
Hair fine but scalp itchy/tingly. Trying to convince myself it’s only tingling 'cos I’m thinking about it.
Would be lovely to be in touch with people at a similar stage to me. I had WLE surgery on 1 Feb and after the chemo, will be having rads as well.
Take care everyone and let’s hope the dreaded ‘nadir’ is not as bad as it might be…
ann
x
Hi Helen
this is answer to immunity inj. i think you are given them if your blood counts are low or at risk to getting infection. my blood counts were very good best Dr seen for a while. i had a wound from op that wasn’t healing right and rather than delay chemo anymore they decided to give me the inj so stop risk of infection to wound. i am having 7 but most hospitals apparently give three or even one as expensive and nurse has to come daily. my wound has healed completely now so i don’t think i will be having after next chemo session. mine is April 10th… julie
Hi Everyone.
I am so pleased there are a few of us having chemo at same time. I know we are all different but it helps to relate to someone going through same time. I cant believe its been OK so far. Does the second one effect us more…Please all keep in touch and we can get through it together aches pains tips and all. i am having herceptin after my chemo but don’t need rads. i am booked in for 6 but have been told as long as i have 4 i am allowed herceptin. i hope i can do 6 it must be better for me… have a good day all. its lovely and sunny here in bedfordshire.
xx julie xxx
Hi Everyone
I am on day 9 now of 2nd treatment and feeling better. So much the same as last time. But now that I have meds for IBS and Acid reflux I have no tummy cramps or heartburn this time ! Thank goodness.
Thank you Julie for info on immunity injection.
I have my next chemo on 7th April.
I am in Aberdeen . Very cold here at the moment , we had some snow over the weekend.
We are going to Avemore for a weeks holiday on Saturday so I may be off line for a bit I’m not sure if they have internet access but I will be taking my laptop anyway.
Hope to catch up with you girls when I return if I can’t get on line.
May all go well with you all .
I find it difficult sometimes finding the correct link to to get back to where I last posted any one else having the same trouble.
Yes it takes a bit of searching to find the threads - it’s such a busy website ! You can bookmark a particular thread which helps.
Sarah
x